Beyond Individualism

Although dichotomies such as online versus offline and for-profit versus not-for-profit, have been challenged by data-driven personalized medicine, a dichotomy that is still intact is that between self-interest and care for others. It is rooted in the dominant Western understanding of persons as (ideally) autonomous, independent, and rational individuals. This chapter argues that such an understanding of persons creates tangible problems in medical practice and research, and it leads to a vision of personalization that could be seen as fostering ruthless individualism. The chapter proposes ways to overcome this unproductive conflation of personhood with individualism in medicine. It explores how personalized medicine could help to bring personal interests and social solidarity closer together.

The Social Life of Evidence in Personalized Medicine

Many studies look into the cost implications of digital tools and other new technologies, while only few explore the cost-saving potential of high-touch aspects in medicine. This chapter argues for an understanding of personalized medicine that focuses on the subjective needs and wishes of patients and on the importance of human relationships. It proposes that “social biomarkers” reflecting nonsomatic characteristics of patients that matter to them in connection with their health care should be included in technologies of personalization as a type of evidence in its own right. It discusses how social biomarkers, in conjunction with other initiatives that bring personal meaning to the table, could not only help to make medicine more “personal” in the deep sense of the word but could also help avoid waste and save cost.

Setting the Stage for Personalized Medicine

With the help of today’s technological tools medicine has become much better at measuring individual difference. Personalized medicine—especially in its iteration of Precision Medicine—seeks to include ever wider types of information and data. Some people propose the use of remote and wearable sensors to monitor patients as continuously and comprehensively as possible. The hope is that health problems can be predicted in these data doubles before they manifest themselves in the bodies of actual patients, but such personalization also requires various contributions from patients, in the form of data, time, effort, and the willingness to be monitored unobtrusively. How do these developments “empower” patients, if at all?

Just Profit?

In the literature, striving for financial profits and shareholder value is often contrasted with the quest to create social value and societal wellbeing. The ways that today’s health entrepreneurism is organized, however, do not fit this distinction. Rather, it takes place within a political economy that encourages the marriage of social benefit and capitalism. Also, personalized medicine unfolds in a situation where it assumed that commons and commerce can and should be aligned. What does this mean for patient participation? Are all contributions that patients make to medical practice and research, in terms of data, time, and effort inevitably also creating value for private corporations, and is there something that we should and could do to prevent this?

Always On

In contrast to expectations ten years ago—and to most portrayals in films and popular media—current iterations of personalized medicine do not include any plans to sequence everybody’s DNA at birth. Genetic and genomic information play a role in personalized medicine, but they are only one instrument in a much larger orchestra. What visions of personalized medicine do entail, however, is that ever wider ranges of information about people’s bodies and lives will be brought together into personalized “health maps,” and that remote sensors and other ways of unobtrusively monitoring patients will be used much more widely. Also, the dividing line between monitoring for wellness and lifestyle (for example, Fitbit) and monitoring for medical purposes (for example, telecare) is blurring. How do these practices and developments affect concepts of privacy, and what needs to be done to protect the interests of patients and civil society?

The Patient Researcher

Policy makers and practitioners alike emphasize that the realization of personalized medicine requires “activated patients,” and some go as far as saying that the survival of our health care systems will depend on it. This chapter shows that in the era of digital health, “activated patients” are not merely expected to obtain information on their health and manage their own health risks but are also supposed to contribute data and information. This expectation is built into the very infrastructures of digital health and medicine, which turns patients into contributors to the personalization of their own health care, and to research, by default. Do those patients who cannot or will not participate miss out on the benefit of personalization, or can it be a blessing to be below the digital health radar? And what new practices and patterns of exclusion emerge in the context of these developments?

Conclusion

In order to create a personalized medicine that foregrounds factors that are important to patients and enhances social solidarity we need to repoliticize understandings of patient participation and empowerment. Drawing upon the arguments made in this book, this concluding chapter develops a typology of patient participation and empowerment. It discusses how they each type of participation and empowerment can contribute (or not) to thinking and acting a new understanding of personalized medicine into being.

Beyond Empowerment

In order to assess who is empowered by technologies and practices of personalized medicine, we need to look at how structural aspects of power interact with the self-governance of people. After a discussion of how we can see and analyze power, this chapter illustrates the dynamics of empowerment and disempowerment by using two cases, direct-to-consumer (DTC) genome-wide testing, and the (re-)quantification of medical imaging. In both cases, technologies and practices of personalization lead to new ways of discriminating between people on the basis of seemingly “objective” individual somatic characteristics. This has consequences for social and political categories such as fairness, as well as for seemingly factual notions such as age.